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» 7 months since the diagnosis
New Here: Question/My Story EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
New Here: Question/My Story EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
New Here: Question/My Story EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New Here: Question/My Story EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
New Here: Question/My Story EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
New Here: Question/My Story EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
New Here: Question/My Story EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
New Here: Question/My Story EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
New Here: Question/My Story EmptyMon Apr 08, 2019 7:54 am by Jo44

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


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Post  overit14 on Mon Apr 03, 2017 2:00 am

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just hurts. This is only brought on by sexual contact. I never get it otherwise. At least not that I recall unless it was a coincidence with when I happened to be sexually active. I have been tested for STD's til I'm blue in the face. They always come back negative. I'm def not complaining about that. It's so frustrating b/c no one seems to know why it happens and I keep being told it's dermatitis. I have wracked my brain trying to figure it out. It's happened with just receiving oral & finger stimulation. One time it happened only from receiving finger stimulation. It obviously happens with intercourse whether it's protected or unprotected. With my exes we usually started off with protection then stopped once we knew we were only going to be with each other. My last ex it would happen sometimes, and sometimes not. But again, it ONLY comes on with sexual contact. I am experiencing it right now as I type this b/c 2 weeks ago I received oral & finger stimulation only, and then like a week later here it is. That's another thing, it can show up the day after or up to a week or so after. I don't understand that part either.

Last June this happened and I went to my gyno to the have the usual exam and std screening and she actually got annoyed with me thinking I'm paranoid b/c I would want to be tested any time this happened. That upset me of course. Anyway she sent me to a dermatologist who specialized in gynecology. The problem was that by the time I was able to get in to see her my symptoms were gone. Through conversation only, she was perplexed and referred me to a vulvar pain clinic. Well I was too scared to have sex after that last time b/c it hurt so bad so I never went to the vulvar pain clinic b/c I didn't see the point if I didn't have symptoms for them to look at. Fast forward to the present and I finally decided to have a little fun (same guy as last year, we are friends...so he thought we would just try oral and not intercourse and see if it happened again b/c he knows what I went through last year) and now I'm sitting here with my vulva on fire yet again. I'm so over it. It's depressing. I am a sexual person and I love sex. This has made me shy away from dating altogether and I hate the thought this is what will happen any time I have any kind of sexual contact.

Anyone else here that can relate? Any info/advice/encouraging words are appreciated. Thanks for reading.

p.s. My referral to the pain clinic expired last month but I'm calling tomorrow to see if they will see me anyway. Wish me luck.


Last edited by overit14 on Thu Apr 06, 2017 11:49 pm; edited 1 time in total

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Post  fairlight10 on Mon Apr 03, 2017 7:20 pm

I am sorry no one has replied to your post. May be they are baffled that you only have problems after sex. I have vulvar vestibulitis since 2012. Before being diagnosed my vulvar was red, burning and the pain was a like I was being cut. Sex was avoided. Sitting was painful and peeing seem to make it burn. I had tests done to rule out any dermatitis. I am now in my 5th year of taking an antidepressent at a low dose. It keeps me comfortable. May be you could suggest trying some medication.

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Post  Meggiemay on Mon Apr 03, 2017 11:25 pm

I think I have the same thing. Sex causes my vestibule (more the upper part) area to get red and burn like acid (no itching). It comes on 24-48 hours after sex (or even masturbation) and is continuous . This first happened to me 2 1/2 years ago and continued for 3 months. Sex, then irritation and burning for a few weeks after, then it would heal and I would attempt sex again and start the whole thing over. I went the gyno and she said I had a tiny bit of yeast but it shouldn't be causing that much inflammation, she ended up giving me a Diflucan and telling me to use more lube. Eventually, this all went away on it's own. I was basically pain free for 2 1/2 years, except for 3-4 mini flares lasting a day or so after sex, but now it's back full force. I've been burning and sensitive for a month and a half, and it doesn't seem like it's going away this time. I have a gyno appointment in 3 weeks, but who knows if she'll be able help.

I wish I had answers for you : (

Oh and I forgot to mention, this all started with one sexual encounter where the guy was a little too rough with his fingers : (

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Post  Sophia15 on Tue Apr 04, 2017 3:05 pm

Hello I just came back on the site. I haven't been on since December. I would have answered you. I fist have a question for you. Does the burning you are experiencing feel like it is on the outside only? Like the entire vestibule and labia region and colitis. Or is it outside and inside. This sounds like how I started over 16 years ago. At that time I was diagnosed with the broad term of vulvodynia. At that time I was only 28 so I was put through the mill being tested for every STD as well. I was upset about it because I wasn't the type that slept around but did appreciate it too because who knew if my significant other at the time was faithful and to be honest with you I'm still with him today. Really good man. Doctors back then didn't really understand what they were doing as much as they do now. This is my advice to you. Find a doctor who can diagnose you properly. Make sure they take insurance although you will find that most of these doctors don't. One thing I also learned is use your gut. If something doesn't feel right in your gut about the doctor run out the door. I should have done that and my life may be different right now. Try some ice for 15 minutes. To help with the burning. Make sure as to not put it directly on the vagina. You don't want frostbite there. Get a good lubricant for sex without any chemicals. There is one called slippery stuff. I use to use that but I no longer am capable of being physical with my man at this time. I use coconut oil. Organic virgin on the outside it's a solid. Nutiva is a good brand. Some ppl don't like to use it. I feel it helps. Others have thanked me for it too. I keep it in the refrigerator so it gets cold before I put it on and I'm very generous in the amount I use. Take probiotics everyday. Hope that helps some. Your in my prayers. Sophia.

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Post  overit14 on Thu Apr 06, 2017 11:13 pm

fairlight10 wrote:I am sorry no one has replied to your post. May be they are baffled that you only have problems after sex. I have vulvar  vestibulitis since 2012. Before being diagnosed my vulvar  was red, burning and the pain was a like I was being cut. Sex was avoided. Sitting was painful and peeing seem to make it burn. I had tests done to rule out any dermatitis. I am now in my 5th year of taking an antidepressent at a low dose. It keeps me comfortable. May be you could suggest trying some medication.

Hello. Just wanted to thank you for answering. I am so sorry you are going through this. It sucks so bad. I have thought about taking antidepressants but I have heard so many stories that it makes me hesitant. I will think it about some more though. Thanks again and I hope this goes away for you. I love you

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Post  overit14 on Thu Apr 06, 2017 11:20 pm

Meggiemay wrote:I think I have the same thing. Sex causes my vestibule (more the upper part) area to get red and burn like acid (no itching). It comes on 24-48 hours after sex (or even masturbation) and is continuous . This first happened to me 2 1/2 years ago and continued for 3 months. Sex, then irritation and burning for a few weeks after, then it would heal and I would attempt sex again and start the whole thing over. I went the gyno and she said I had a tiny bit of yeast but it shouldn't be causing that much inflammation, she ended up giving me a Diflucan and telling me to use more lube. Eventually, this all went away on it's own. I was basically pain free for 2 1/2 years, except for 3-4 mini flares lasting a day or so after sex, but now it's back full force. I've been burning and sensitive for a month and a half, and it doesn't seem like it's going away this time. I have a gyno appointment in 3 weeks, but who knows if she'll be able help.

I wish I had answers for you : (

Oh and I forgot to mention, this all started with one sexual encounter where the guy was a little too rough with his fingers : (

Wow. You sound just like me. I'm so sorry you're dealing with this. It really affects your sex life, self-esteem, feeling sexy, etc. Well let me not speak for you, but it does for me. I hate this. The first time this happened I was red and burning for over a month. And like I said in my post, I was tested for all STD's and they were all negative and every time since they have been negative. I think they tell me dermatitis b/c they have no clue what else it could be. I was able to get an appointment with the vulvar pain clinic in 2 weeks. I am still burning and this started on March 28th. I sure hope your gyno will refer you to a specialist who can maybe get to the bottom of it. Everything you wrote is exactly what I go through. I had one of my worst bouts with fingering alone. So I understand what you mean about that. I was also given Diflucan several times in the past even though I didn't test positive for yeast. It's been horrible to go through. After this clears up I'm not having sex until I meet "the one" b/c going through this with a friend like this past time or just guys I'm dating that I know are not really going to go anywhere is just not worth it. And I'm hoping it will not happen when I do meet that special person. I'll keep you posted on what happens b/c maybe it can help you as well. I love you

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Post  overit14 on Thu Apr 06, 2017 11:44 pm

Sophia15 wrote:Hello I just came back on the site. I haven't been on since December. I would have answered you. I fist have a question for you. Does the burning you are experiencing feel like it is on the outside only?  Like the entire vestibule and labia region and colitis. Or is it outside and inside. This sounds like how I started over 16 years ago. At that time I was diagnosed with the broad term of vulvodynia. At that time I was only 28 so I was put through the mill being tested for every STD as well. I was upset about it because I wasn't the type that slept around but did appreciate it too because who knew if my significant other at the time was faithful and to be honest with you I'm still with him today. Really good man. Doctors back then didn't really understand what they were doing as much as they do now. This is my advice to you. Find a doctor who can diagnose you properly. Make sure they take insurance although you will find that most of these doctors don't. One thing I also learned is use your gut. If something doesn't feel right in your gut about the doctor run out the door. I should have done that and my life may be different right now. Try some ice for 15 minutes. To help with the burning. Make sure as to not put it directly on the vagina. You don't want frostbite there. Get a good lubricant for sex without any chemicals. There is one called slippery stuff. I use to use that but I no longer am capable of being physical with my man at this time. I use coconut oil. Organic virgin on the outside it's a solid. Nutiva is a good brand. Some ppl don't like to use it. I feel it helps. Others have thanked me for it too. I keep it in the refrigerator so it gets cold before I put it on and I'm very generous in the amount I use.  Take probiotics everyday. Hope that helps some. Your in my prayers. Sophia.

Hi Sophia. Thank you so much for the advice. To answer your question, it is only on the outside, not the inside. I know I have read that a lot of women who experience pain/inflammation in the vulva have painful sex on the inside...I have only had it hurt b/c the skin of the labia gets irritated and it's like the friction makes it hurt. I was told by the dermatologist who specialized in gynecology to get the slippery stuff lube but I couldn't find it anywhere. I am not going to need it now anyway b/c when this burning goes away I'm not having sex with anyone until I meet "the one". Like I replied to the last young lady who responded, I am not going through this with a friend or whatever like I am now. It's not worth it. I hate it so much. It's so painful. I am pain as I write this. I actually have Nutiva coconut oil on my nightstand now. I think I used it before when this happened and it burned some. I have a steroid ointment they prescribed for the pain and I put some on not long ago but it doesn't help much and sometimes it burns really badly as well. I have used ice like you mentioned. I put some ice in a clean washcloth and just put it in my panties and it felt so good. Lol. It was the only thing that gave me relief, but of course the relief was temporary. I did get an appt. with the pain clinic in a few weeks but I'm calling back tomorrow to see if there are any cancellations b/c I need help! I hope they can help me. I'm so sorry you're going through this. I know it is tough. It was hard when I was with my ex b/c it would happen sometimes and then it wouldn't others and I would get scared to have sex with him period b/c of it and he thought I was paranoid sometimes. Oh well. Thanks again for responding. I love you

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